What interesting, useful and fruitful discussions you - TGB readers - have been carrying on in the comments of posts about my pancreatic cancer. Some of you have been-there-done-that with a variety of cancers and I appreciate your generosity in sharing your experiences – it enriches our understanding.

On Wednesday, I met with the medical oncologist and her team to talk about my upcoming chemo. I had been dreading the meeting since it was booked a few weeks ago.

Despite what you think from my written reports here, my upbeat, optimistic days run parallel with dark, pessimistic, even frightening ones that include horrible images that appear unbidden as I am falling asleep at night or for an afternoon nap.

My mood worsened in the days leading up to Wednesday's meeting with memories of how chemo sickened my father and wasted his body 35 years ago, which I tried to counter with the success my friend Joyce Wadler had with chemo through three different cancers.

It didn't help much and even though I told myself that there was no point in having gone through the terrible recovery period from the Whipple procedure surgery and not follow up with the recommended chemo was just stupid, my gloom persisted.

“Stupid” is the word since, as the experts keep telling me, I am in better shape to beat this cancer than 90-plus percent of patients. To recap:

⚫ Because most pancreatic cancer is detected after it has spread, only ten percent of people diagnosed are eligible for the surgery.

⚫ The portion of my pancreas that was removed, including the tumor, was “clean at the margins” meaning it has not spread from that organ.

⚫ In addition, 17 lymph nodes touching the pancreas were removed and tested for cancer cells; three were positive.

⚫ Eighty percent of patients in my circumstance who take the chemotherapy are dead from the disease in five or fewer years.

And you wonder why I'm sometimes morose about this?

On the other hand, there is what my primary care physician said when I saw him a couple of weeks ago: “Ronni, you are very healthy - except for the cancer.” Maybe that is what made the medical oncologist on Wednesday more upbeat about my chemo outcome than some others: that it will be “curative” which means, like many other cancers, it is considered cured if the patient is cancer-free in five years.

To know that, there will need to be regular checkups, tests and scans to monitor the cancer (or – best case scenario – lack thereof) which, of course, leaves me with the life I have always wanted to avoid: being a professional patient.

But what other choice is there? So in mid-September I will begin chemotherapy with two drugs – one intravenous weekly through a port permanently embedded (for the duration) in my chest, and the second drug taken orally twice a day every day, each for three weeks in a row, then a week off before starting again.

For six months this goes on which will take me to March 2018. There are, of course, potential side effects – fatigue, various kinds of sores, peeling and cracking skin but not, in my case, hair loss, or not much they say.

With the intravenous drug alone, 55-60 percent of patients are alive after three years, the medical oncologist tells me. When the second, oral drug, which is relatively new, is included that number is increased by 15-plus percent.

That's the good news. The bad news is that the cancer might come back, usually in the liver or lungs and there is little treatment then.

Those of you who have discussed your chemotherapy in the comments undoubtedly know all about this with whatever differences apply to your kind of cancer.

To me, this is all new and in my gloom, I sometimes lean toward agreeing with those people who renounce these “poisons” in favor of herbs and other “natural” treatments.

My more rational self knows perfectly well that if flax seeds cured cancer we would have heard about it and they would cost $5000 an ounce.

Like me, you have probably noticed through the years, that people are remarkably adaptable to difficult even, sometimes, severe circumstances and once I get started with this new weekly routine in mid-September, I'm sure it won't feel as burdensome as it does now.

* * *

ABOUT THE PURPLE RIBBON: For readers who have commented or emailed objections to my use of the pancreatic cancer purple ribbon, I ask you to consider this advice Albus Dumbledore gives to Harry Potter in Harry Potter and the Philosopher's Stone, with which I heartily agree and applies to symbols as well as words:

"Call him Voldemort, Harry. Always use the proper name for things. Fear of a name increases fear of the thing itself."

Comments

Yes, Ronni, your feelings are natural and come with the territory. Your ability to perseverate for a bit to write about what you are going through is therapeutic and a testament to your strength.

I have dealt with the possibility of treatment for 17 years and am now nearing the treatment stage. Living with the threat of treatment for the last year and getting a bye at each Hema/Onco visit, but experiencing the dread of the visit, has taken a toll psychologically.

CLL is a blood/lymph/bone marrow involved cancer and some with the right "profile" of mutations/immunological readings get a bye for years because there is no cure, and as long as you are not physically sick, treatment is delayed --you are on Watch and Wait--I would add Worry to that. No two patients is the same, no one treatment is the solution--so lots of research is being done. Then you read the side effects of what is being proposed for you. In actuality, for this particular cancer, it is a "best guess" scenario.

However, I blog with a world-wide group dealing with the same cancer and it helps to read how others are coping and what they are facing. There is a lot of information shared from the research/trials of new meds--some of which (most, actually) are not chemo-based but targeted to the aberrant genes that drive this particular cancer. The jargon becomes a way of thinking in regard to the blood cancer I have. But---the down days are there, the dark moods come and I can benefit from a walk, speaking with neighbors and petting a dog or two.

I could not agree more with the quote from Harry Potter. Call it what it is, face it.

One of my problems as others on the CLL blog relate, also---we are still going, living, doing as much as we can while we can, and people can't understand that we have limitations and a looming chance for treatment. "You look healthy." is often said--while my insides are cowering in fear of the enlarged spleen, liver, and interior lymph nodes and the blood reports showing kidneys are becoming involved. I usually say, yes, but... and let it go. I suspect I will be in treatment by, if not before, January, and the latest prediction for me is a similar 6 mo. combo treatment (one of which is a chemotherapy pill, the other a targeted IV therapy. My days days of glibness are waning.

Thank you for sharing the inner workings of the mind cycling all the possibilities that loom. One day at a time is easy to say. Hold close the support of the people you have gathered.

Dear Ronni - thank you for these gut wrenching totally honest posts - so helpful to one going through similar - I am considering giving up my hormone treatment after 7 months - post mastectomy - because of side effects - I know these are minimal to many chemo side effects - also my chance of recurrence is low but it is still there and my partner is horrified that I would consider giving up possible help - but at 79 do I want to give up five years of my life to feeling like this? Not an easy decision - so my heart goes out to you facing much harder choices - I think you have made the right one and I would in the same place - but it is not easy so my heart goes out to you - and my loving well wishes - Jeanette

Chemo is a scary proposition. But when my father had it many years ago, he didn't have any side effects. Prayers that it is the same for you.

Side note to Estelle R. My middle name begins with R.
There is a French model (now 51) and a current popular British singer with same name.
And the eye clinic's receptionist's new granddaughter was just named Estelle.
The name keeps going.

Thank you for allowing us to go on this journey with you Ronni. I really admire your tenacity in dealing with your cancer. You are absolutely entitled to have gloomy days. You are on my mind frequently throughout each day and hope you continue to feel well enough to continue to bring us along with you as you begin the treatments.

Ronni, reading your post about chemo brought my experience with breast cancer front and center in my mind. i remember all the same emotions and many of the same symptoms.But I got through it and so will you. You are strong and ready and it all will be over. life is a day to day proposition. We never know what tomorrow will bring But taking chemo one step at a time is the answer and you will do just fine.

You are about to embark on what probably will be the one thing that will challenge your reasoning. increase your loneliness, and heighten your sense of self preservation. The one thing that you should remember is that, when you come through this (unscathed, as I know you will), you'll have completed the first step on your way to a full recovery.

"When I use a word," Humpty Dumpty said in a rather scornful tone, "it means just what I choose it to mean -- neither more nor less." "The question is," said Alice, whether you can make words mean so many different things." "The question is," said Humpty Dumpty, which is to be master -- that's all."

I admire your ability to so openly and cogently discuss what you are facing in your disease, day by day. As you say, having invested what you have in staying alive so far, the next logical step in the process would be the chemo. I can only imagine the difficult decisions this may pose. I suspect that you've read the 2012 article about what many doctors choose for themselves in similar situations, which is not to aggressively treat.

I read that article five years ago, while taking care of my mother-in-law in the last months of her life. I read countless articles at that time to try to help me learn how to better help her and what to expect as things progressed. She did not have cancer, she had Alzheimer's and, at 91 when I took on her care, she was actually very healthy otherwise until, at 93, she fell and suffered a pelvic fracture; for the next three months, it was all downhill from there.

During the time caring for her, I came across Time Goes By. Your intelligent writing and your readers' comments helped me tremendously then, and TGB continues to be a bright spot in my day. Thank you for persevering, even through this difficult time of your life, and continuing to share your insight and experience.

Wishing you the best possible experience as you continue to walk this path to recovery.

Glad to read that you now have a known path ahead, though, of course, not a known destination. Most of us, most of the time, don't recognize this is where we all are -- except in those moments when we don't even see a path. I'm reflecting on such things these days and pulling for you every day.

I have no idea which of the both-awful choices I would make in your position: treat or not. I don't have a death wish, but at 80 Y/O I'm not sure that I would elect the option to treat, given the side effects that some (not all) experience. I might give it a try and see how it goes; the option to stop anywhere along the line is always there for each individual.

Life has been good to me and I am most fortunate that cancer has not been one of my ailments. So many of your team have been able to share their experiences in having this dread disease that I am humbled and more aware of my good fortune.

I cannot, nor should I, offer any advice or knowledge to help you through this difficult time (Now there's an understatement if there ever was one). I just want you to know that you are in my thoughts every day and I will be on your team for as long as this takes.

There are so many positive, encouraging pieces of information in this post. You are, as always, direct and bold in sharing your information and thoughts. It's admirable that you don't hold back, as you give us the bad news along with the good. Please accept my very sincere wishes for the best of care, and as much comfort as possible during your chemo.

Another lymphoma person here, Ronni. I admit I had 'chemo light' (is there such a thing) and it packs a wallop. Your attitude is great and that will help. I would only add one thing to your armamentarium - laughter. Force the laughter if necessary, but laugh. As often as you can. So to get you started - "a guy walks into a bar..... Har de har har har har har. 'Two guys walk into a bar and sit down to eat their lunches. Then the bartender says, ''Sorry, but you can't eat your own food in here.'' So the two guys look at each other and swap lunches...Har de har har har har har. Good luck and hang in there.

Thanks for sharing your post Roni. You know exactly what you need to do.
If you can contact other pancreatic cancer survivors you will get good information
about how those procedures actually pan out. Prayers for your radiant health.
Love,
Ellen Greenlaw

Your strength will carry you through these next steps you've chosen based on my perceptions of you. I continue to send you caring positive coping thoughts through your coming treatments. Don't forget to release those endorphins any way and time you can.

Thank you for sharing with us, Ronni. Your commenters offer much wisdom, but I also hope you are able to take advantage of some sort of group where you get to share your fears and concerns with other current cancer (or other life-threatening illness) patients. If that is the sort of thing that would be helpful to you, that is. It would be for me, because it would make me feel less alone.

I'm sure you are familiar with the quote attributed to Churchill: "If you're going through hell, keep going."

I'm glad you have that purple ribbon. There's a big elephant in the room but we're talking about it. That's a good thing.
You pass the test of courage in my book. Thank you for being so honest about your cancer. Giving us all the opportunity to learn and most of all support you.

Thanks again for your being real. We all love it when you're all upbeat of course, it makes us feel good too. But no way could you go through this challenging journey without the darker moods. I remember waking in the hospital at night at 28, after surgery for ovarian cancer, and seeing all the flowers people had brought or sent. I was terrified, and they were my funeral flowers. "Don't be afraid," is baloney. And Dumbledore is right. The five years following, wondering before each check up what the verdict might be..............it got easier.............and I was younger. And honestly? At that point, for me, cancer changed my life in many, many ways for the good.

Thinking of you daily, the morning prayer candle still has your name in it. Love to you.

I'm curious. Is there an annual test like a mammogram that would detect pancreatic cancer in time to stop it from metasticizing? Perhaps not as simple as a mammogram, but a blood test, mri, catscan, etc. Is there no attention to this side of the disease because doing something would be too expensive, or that there simply isn't anything that would catch it. The do catch it eventually so why not something to catch it early?

Carol...
There is no test for pancreatic cancer and the symptoms are so varied that it is one of the most difficult diseases to diagnose. For a long time, pancreatic cancer research was seriously underfunded compared to the cancers that get a lot of publicity like breast cancer. That has changed to a degree in recent years but it still needs more funding.

My surgeon, who is also a researcher in pancreatic cancer, has been working toward a blood test and believes they are getting close to accomplishing that.

Ronnie, though I never have had cancer nor any other major illness (I am 91 and am very grateful), i feel very deeply for you . I, along with all the other posters, wish you the very best.

Just a thought---when you have good days, revel along with your feelings. And when you have bad days, don't fight them. You're allowed to have them, and just try to think--"This , too, shall pass."
Estelle R.

P. S. A note to Estelle D. Glad you found three. As you said, the name seems to be going on.

You can handle this, Ronni - up, down, light or dark. And keep writing so we can share the ride, with hope and great caring in your corner. Unforeseen by me initially, you've opened up various 'opportunities' for each of us to explore, if we so choose.

Everything you are facing has to be very scary. I realize this is not the best thing to say, but I was relieved to know that you have had dark moments. You are such a strong and positive person that a career depressive like myself finds your courage and spunk a bit unbelievable at times. If anyone can get through this, it should be you. All the best and warm wishes from me and everyone who knows you either in person or from your posts. As we say in Italian "In bocca al lupo" -- "into the mouth of the wolf" -- the traditional but appropriately scarier version of the English "break a leg."

I attended my friend's 18 chemo treatments. Airy-fairy as it sounds, I had her envision white light flowing through her body during the process. Reading to her provided an excellent distraction; we had several books going and she would choose which one she was in the mood for. Eight years later she is healthy, healthy.

Ronni, in your shoes, I'd probably go for the chemo, too. But no wonder you have bad dreams, contemplating the way forward. I, like many others, am eager to read ALL of this experience from your point of view--including the bad stuff.

I will probably feel differently with the next bad diagnosis I myself get, but it seems to me there is far too much pressure on people struggling with illness to be cheery and upbeat. If this is not a person's natural temperament, forced optimism feels like an energy-sapping fraud. I wallow before I fight back.

Ronni, you are gutsy and brave, and normal, too. Having despair and dark thoughts and down days is very normal. What makes you exceptional, to me, is that you embrace your fears, research the problems and trials you are facing, share with your blogging community, seek experts for advice, etc. Keep on doing it all.

Ronni, you have a medical team that you trust, which makes all the difference.
I've been through two breast cancers. I didn't like or trust the first team and felt awful throughout the procedure and the radiation therapy that followed. I was too much in a hurry to have the surgery done and didn't take time to choose people that I felt I could trust.
It was quite different the second time, and I find that although I went through the same sort of procedure, it felt much lighter.
As for naming cancer by its name, I am with you.
Don't forget that all your faithful numerous readers are with you.

Hi Ronni-I also can't understand the complaints about the Pancreatic Cancer ribbon. It's your blog-you can put a naked Chippendale dancer with a purple ribbon on his penis as far as I care! In fact, that might be fun!
I'm with you mentally if not IRL..and I can be there anytime you call. I know you have a lot of help already but please, call on me if the need comes. I'm close.

Also, I'm scheduled to see an endocrinologist in a few weeks-I've had low fasting glucose tests for a year running-abnormally low. The thought is it might be an insulin secreting tumor-which is quite rare but theres not many other tests to prove it or not.

ironically funny isn't it?

I'm presently of two minds. Part of me, the chicken part, wants to just let it be, make sure I always have "Smartees"- these little sugar hallowe'en candies, in my purse and at my bedside and let things roll as they may. It can be a bothersome thing-like the time I had a hypo at Freddys and almost passed out, but for the diabetic checker who ran to the back and brought me orange juice and a chair to the check out stand. Embarrassed-yes I was. But people are generally understanding when we old ladies look a bit grey and sweaty as I did.

The alternate back up mind says-Hell, Elle- Ronni did it, so can you! So I made the appointment and will go talk to the specialist.

My doc wasn't impressed with my self diagnosis of a wonky pancreas caused by type 2 diabetes 25 years ago when I was obese. I lost weight, diabetes went bye bye and I was left with these for-no-reason-i-can-figure hypos.

So..thats me. I'm thinking of you and know your tell us when Chemo time comes. I know the OHSU chemo lab well, having spent many days there with my long time best friend who fought breast cancer for 10 years. It was a good fight.

Hi Ronnie I recently went through chemo for 11 months. This is how I dealt with it, first rule never think you are going to die, I just going every two weeks for 6 hours, the worst thing for me was losing my hair but what a small price to pay for your life, I just went about my day as usuall and now I am 4 years cancer free. And don't worry about the sickness I never got sick once. They give you everything you will need. I don't feel 100% but I may never because
I will be 64 in a few months. But I have a quality of life and couldn't be more blessed!